#6
Posts: 3 | Threads: 0
Joined: Sep 2011
Reputation: 0

  • Registered
Hi I'm new on here thought I'd send you a reply as my son is similar, he wasn't overdue but he has very little head support and bad eye sight too, also he has some kind of seizures at night. Recently I was at Oxford where they told me that
My son is practically blind, I don't believe this especially as they don't even know whats wrong! I was wondering if they have done any of the usual tests to see that everything is as they say 'normal' I feel the same as you about seein other children too, I thought I was being horrible at first and it was my fault but it upsets me so much when I see children the same age walking and talking when my son lays on the floor in silence barely being able togold his own head if you pick him up, going to find it especially hard soon as my sister is pregnant. I know I sound so selfish don't I?I don't want to feel like this Sad but at the same time I see people havin babies cos their children have grown up, where my baby is staying a baby for just that bit longer Smile sorry to waffle on but it's
My first time being able to talk to people in a similar situation Smile xx
#7
Posts: 72 | Threads: 6
Joined: Jan 2010
Reputation: 0

  • VIP
Haven't been on here for a while so sorry for the late response since my last post. I am quite good at dealing with other people's comments or questions and believe me it just comes with time. We don't have a definitive diagnosis so I just say he's got a rare muscle disorder, or a such a rare condition doctors haven't pinpointed it yet. I did go back to work initially after my older son was born and he went to a standard nursery with a health care plan in place. Find a nursery and just speak to them. They organise an appointment with you and all the professionals involved to go through all her extra needs etc. Our nursery were always very good with all this and organised everything, I had no idea how it all worked. Hope you're getting on ok at the mo
#8
Posts: 3 | Threads: 1
Joined: Sep 2011
Reputation: 0

  • Registered
hi my daughter
#9
Posts: 27 | Threads: 2
Joined: Sep 2011
Reputation: 0

  • Established member
Hi

it is very difficult at first to come to terms with everything but before you know it you will be posting advice on here like the rest of us! Take one day at a time and dont feel like you have to 'explain' your daughter to everyone, they will learn to love her for who she is! It can be difficult to begin with the deal with everything but over time things do get easier. Im sure we have all been in the situation of seeing other children the sa,e age doing things our children cant but try looking for the things you daughter can do, every little achievement is a huge achievment to her!

also Phoenixmummy, my sister had a baby at the beginning of the year and i was worried also at how i would react at her having a 'normal baby', my daughter is nearly 9 and he can already do more than she can but you know it hasnt bothered me at all, i enjoy watching him achieve his milestones and being part of his life i suppose at some point we all have to stop comparing our children to average children because no 2 Children are the same, disability or no disability.

Hope some of this helps
#10
Posts: 55 | Threads: 13
Joined: Apr 2011
Reputation: 0

  • VIP
oh huni, i'am sat here reading this and i just want to give you a big hug!!! I too know exactly were your coming from, it's such an emotional and over whelming time for you but believe me it does get a little easier with time.
My son Alifie is 4 in january and we've just had a diagnosis but are still waiting to go back to the genetic team for it to be explained. We knew within weeks of Alfie being born that something wasn't right mainly because he was floppy, very sleepy and wouldn't make eye contact or show much emotion. Alfie started to bottom shuffle last summer but he will never walk or talk. He was born with the cord round his neck and went into shcok, he too had to have oxygen and was in an incubator for the first 48 hours although this is not the reason for his disabilities it was just awful. one of my close friends had her son 4 days after i had alfie and like you i couldnt bear to be around them because it made me realise just how underdeveloped alfie was, thankfully she fully understood. My sister also has a son 6 months older than alfie and the every time they were together i couldn't help comparing them but now i've come to terms with it it's so much easier but that only comes with time don't get me wrong it's still hard like when i go to get my elder son cameron from school and i can see other parents looking at alfie but were i would have got upset and angry before now i think i wish you would just ask me what's wrong.
what area in the north west are you from? I live in north west too and have had fantastic support locally.
talk to your health visitor they sould be able to point you in the right direction in terms of nursery and tell you what help is out there for you. it will get easier i promise x x x
were all angels in waiting!!


Users browsing this thread: 1 Guest(s)